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Should you have easy access to your medical records?

Tommy's fever had hit 105.6, sending him to the hospital. /Stacey Singer

The respiratory bug had been swirling around my family for weeks. Every one of us had been on a succession of antibiotics since school let out, trying to beat the thing with no name, with little success.
My littlest, Tommy, took it hardest.

His third bout of fever in five weeks hit at midnight on a weeknight, 103 degrees. Upon seeing his sky-high white cell count, his pediatrician injected him with an antibiotic.

That night, poor Tommy’s fever spiked to 105.6.

Soon, we were at the emergency room, the white-cell count climbing still higher. After many, many tests, Tommy was admitted. He responded to two strong antibiotics and IV fluids.

Two days later, my little toddler was released, as cheerful and sweet as ever.
We were so grateful.

But what did Tommy have?? What did we have??
With my husband and me still coughing, I knew it would be helpful to our doctors to have access to Tommy’s test results. So I asked for a copy of his medical record.

“You have to come in person to request it and pick it up, and it costs $1 per page,” I was told.
Business hours only. It would take several weeks.

The hospital was a 45 minute drive from my home, and given how much work I had just missed, I wasn’t about to take time off for that.
I never did get the records. My own doctor made an educated guess at what to prescribe me based on my symptoms.
The second try finally worked.

But the entire experience has left me with a consumer’s view of the medical records debate. Why shouldn’t the public be able to see their own medical record upon request? Especially when it would be so helpful to the coordination of an entire family’s health care?

Technically, patients have had the right to see their medical records since 1996, when the Health Insurance Portability and Accountability Act passed.

But actually getting to look at your medical record can be a costly and frustrating endeavor, by design.

Surgeon Dr. Pauline Chen wrote in The New York Times recently about her colleagues’ reaction when she appeared willing to give patients a photocopy of her notes.

“Think about it for a second, Pauline,” one doctor said with voice lowered. “Maybe they are thinking of suing you.”

Others warned her that the patients would bother her incessantly about what terms like “anorexic” and “SOB” meant. (lack of appetite, not anorexia nervosa; shortness of breath.)

This antagonistic view of patients is pervasive in medicine. And it’s understandable here, where lawsuits are ubiquitous. The medical establishment loves proof, and so a study is underway to see if it’s positive or negative for patients to have easy access to their doctors’ notes, and the ability to communicate by email easily with their doctors.

The study is called OpenNotes, and it involves 100 primary care doctors and about 25,000 physicians, according to a description of the study published in the Annals of Internal Medicine last month.

Patients are connected to their doctors via email and invited to view their doctors’ notes before and after a visit.

The study is underway now. Results should be out in a year. Meanwhile, there is political pressure from the Obama administration for health providers to make records more accessible as they go electronic.

At a recent meeting on electronic medical record incentives, the U.S. Department of Health and Human Services invited a woman named Regina Holiday to speak about her experience trying to coordinate her husband’s cancer care without access to their medical records. There was very little communication among their doctors, and she needed to know what doctors suspected.

“After four weeks of enduring the utter horror of not knowing what was going on, I asked for a copy of his medical record. I was told it would be 73 cents a page and a 21 day wait. I was astounded.”